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Simka's letter in a nutshell... Endothelial cells are the cells that line the blood vessels. In the brain, the endothelial cells make up the blood brain barrier. When blood flows past the endothelial cells, the cells experience shear stress. In response to this stress, the cells upregulate the proteins that make the connections between them stronger, i.e., the statement about tight junctions. Stronger tight junctions help the blood brain barrier limit what can pass between the endothelial cells from the blood to the brain, e.g., the white blood cells of the immune system. Simka's point appeared to be that with reduced blood flow seen in CCSVI in MS patients, the endothelial cells will not experience as much shear stress and will therefore have weaker tight junctions between them leading to increased permeability of the blood brain barrier and that this change in the blood brain barrier may be a contributing factor to the development of MS. In addition, Simka noted that low shear stress upregulates the protein, ICAM-1, that's used by leukocytes to cross the blood brain barrier. This is like a double edged sword against the blood brain barrier, i.e., not only is it more permeable but the adhesion molecules needed by the immune system cells to cross the blood brain barrier are more abundant (that's like opening all the windows in your house just a bit and then putting signs out for the burglars). Simka also proposed that he thought that surgical intervention was a good idea.

It seemed like a relevant response to Sneakycat's post which discussed Tysabri. In effect, if Dr. Simka's statement is correct, then CCSVI is a condition which increases the permeability of the blood brain barrier. An analogy would be that it's building more doors for the immune cells to cross into the brain. Tysabri would then be like a vandal that comes around and superglues all of the locks. It may be better to stop the installation of the doors in the first place rather than to address the increased permeability afterwards (note, that's just my own interpretation).

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hope410 wrote:Dr. Dake mentioned in his presentation at the MSketeers fundraiser that white blood cells are larger than red blood cells, so when the white blood cells get through the BBB, the red blood cells get through too, which also puts iron from the hemoglobin through the BBB (I hope I'm remembering this right).

If that's so, why aren't RBC's found in spinal fluid during spinal taps? Wouldn't they also be in the CSF if they've breached the BBB along with the white cells?

good question.
i am not sure that i have a good answer for that one. not in the state i am in right now
so tired. so need a vacation

elliberato wrote:Have we really gotten any further since Zamboni's original discovery? Seems like there is a lot of learning to do and as well results of the procedures do not have us doing cartwheels. Literally. Is there not a chance that this entire vein malfomation could not be in vetro but rather an after effect of this monster that is attacking our insides?

elliberato
i dont think so.in autopsies, there is no inflammation in the veins, only in the brain

we have to be realistic the effects are so variable. the disease manifestations so complicated.

Thank you for being on this site. I hope my case may be of interest to you. I would like your opinion.

I am a 57 yo male. I have lived in the south or in the tropics all my life with plenty of outdoor physical activity. In 1988 I was involved in a boating accident and broke my neck (crushed C-5). I had fusion surgery putting C4 and C6 together with a piece from my hip. This surgery is done from the front of the neck and the surgeon has to pull open all the neck stuff to get his hands on the vertebrae. I recovered fully.

In 1993 I had a neurological episode where I lost sensation in various parts of my body. The original neuro-surgeon wanted to drain my spinal cord into my stomach. After about six months the neuro-deficits resolved, so I declined the surgery.

In 2008, at my regular physical with a GP, I complained that my balance was getting noticeably worse. He recommended an MRI. That MRI showed lesions, was reviewed by a neurologist who ordered a lumbar puncture, which showed O-bands. I was therefore diagnosed with RRMS. I was told to expect further deterioration and be in a wheelchair within 5 years. I was started on Copaxone. My left leg started twitching.

In 2009, I went to Mayo clinic for a second opinion. My left leg was showing signs of spasticity. That neuro confirmed MS, said it was secondary progressive, and switched me to Avonex. I quit the Avonex after 5 months because I would rather die than be that sick all the time. That neuro also said that he could clearly see lesions in my 1993 neck MRI.

Also a recent blood test shows that iron serum is well within range but my ferritin is well out-of-range (Mine is 429, normal is 12-282), which means that I am storing iron excessively. I have none of the symptoms of traditional iron overload disease, except for fatigue, and I tested negative for hereditary hemochromatosis. Excess iron storage in the brain makes sense to me and explains all of my symptoms.

It is my opinion, and I have spent thousands of hours researching MS, that I have CCSVI due either to the original neck trauma or the surgery on my neck. The CCSVI is causing excess iron storage in my brain and the MS-like symptoms. Nothing in traditional MS literature rings true to me for my case.

that is possible. but you have to realize that patients with MS can also be in car accidents. To make the associaiton in general, a lot more cspine injuriers should develop ms.

that being said and showing lesions after the spinal crush and surgery may indeed represent the etiology of the outflow obstructions. it will be very interesting to see your MRV and angiogram when you have it done. would you share?

Cece wrote:Have you had time to give any thought to the atlas, the registry, or the ivus paper?

Hope all the vacationing is as fun as it sounds!

Somebody here reported that she went to see an IR, who I am assuming hadn't heard about CCSVI except from her, and the doc came in excitedly with a copy of Endovascular Today in his hands! And another patient, when looking for something to bring in to yet another inexperienced new doc, came up with your paper as the thing to bring. Thank you for getting this out there.

It was just about one year ago, that bestadmom sent a broadcast email to me and all my colleagues just as i was going to the adirondacks.
for a little light reading, i brought along the materials she sent me and I became curious about this zamboni guy and his liberations. I returned, did temprered due diligence and progressively moved into the arena. Now a year later i go back to the woods. this time i go there without one of my jobs. i am so absolutely focused and determined to see this through.

in essence, i have seen amazing results, some long term, others short term. All there ideas need to be explained and confirmed.

i have gotten into very heavy discussions with other isnvd leadership and a day to day email situation. Interestingly dimilar to thisisms.com i look fwward to sharing these great ideas into the future.

take the time to relax, everyone tells me. well i say the same to yous guys

Since the abnormalities being found are far from subtle (malformed valves, anomalous membranes, mysterious septums, muscle bundles [good grief!] etc.) and the backflow of blood through the veins also being apparently quite out of the ordinary, shouldn't more generic procedures be able to detect these physical oddities?

Why does it take operators with highly specialized training using only very specific techniques to pick up signs of what amounts to gross venous dysfunction?

The knock against the recent German and Swedish studies that didn't find signs of venous reflux was that they weren't using the precise Zamboni protocols. Doesn't the fact that such precise protocols need to be followed throw up some question marks about the hypothesis?

This kind of reminds me of the MS researchers at Vanderbilt University who repeatedly (up until this day) find signs of chlamydia pneumonia in the serum and CSF of MS patients, when no other researchers or labs can replicate their claims.

Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?

PCakes wrote:The azygos vein has not been investigated because, according to the physician, the azygos can not suffer from stenosis if the jugulars are normal.

That is incorrect. the azygous can suffer from malformation in the presence of normal jugulars. however it is thought that two venous outflow obstructions are necessary in order to have problems

If reflux is essentially creating the problem, wouldn't a single refluxing vein create problems? Is it possible to have reflux with a single stenosis? Maybe some of us who have had very mild and very slowly progressing disease have only a single obstruction?

We have so much to learn about this condition and there seem to be so many obstructions to moving forward with research.

yes, i stand by my statement: we are in an age of discovery.

i think that one of the three major veins obstructed plus an outflow problem like the lumbar veins, may thurner sydrome and other obstructions that force the blood to find alternative vicarious pathways can cause problems.

And how could we (many of us that have been in Katowice and only 1 larger vein occlusion found and treated) find out about that other vein? Be patient and wait for further research I guess... I currently have no other solution - except already addressing it with my Belgian doc (Dr Beelen) in Sept. Have a second residence in Belgium, so am happy found local assistance. But I'm not sure he is ready for checking the lumbar veins yet... May I ask him to get in touch with you - or maybe he has already been in touch with you?

marcstck wrote:In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?

when I approached the guy who did my first dopplers with Zambioni's 5 tests, he said these were all pretty easy and standard tests. He was a neurologist specialising in Stroke and the use of TCD. However, he only found 1 of the five criteria on me (reflux in my IJV)

I was angioplastied by Simka’s team last March. I felt great for 4 months. But recently, some symptoms have reappeared: although not as bad as before the angioplasty of my two jugs and stent placement in my azygos. It felt soooooo good that I want that back. I suspect intimal hyperplasia in my stent after reading your posts. I am presently working hard locally (Montreal) to find and convince a doc who is willing to see me as a person with a vascular problem-now that I was stented and angioplastied-and look at my veins but it is not a piece of cake. Vascular doctors up here were told not to touch us (MSers) but of course they can angioplasty people whom are hemodialysed and develop blocked jugs.

I’m concerned about total blockage of my azygos with time; if of course my problem lies there. I guess total blockage of a major vein is not a good thing. Is this scenario possible ? Do I have time to try to convince someone here or is it kind of urgent that I should be taken care of ? Should I run to the emergency of my hospital before necrosis? Go ahead scare me....

Thank you for everything you are doing for us. You are the angel I am trying to find up here. Hopefully they made a few more after you and there is one in my area!

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